Ovacome have linked this post and all those that follow to their website where they show up as a live stream!! Along with whatever picture you use for your profile... Sunflowers are fine, but some of you may not wish your photos to be used in this way?? ! No, I don't remember anyone from Ovacome mentioning this to users of this site either!!!!!
Over the years I've seen a number of decisions, statements and publicity drives by Ovacome which have often left many women with OVCA reeling left saddened when it is apparent their feelings were not considered.
For clarity & contrary to Ovacome's statement, there are a number of online sources of support alongside this wonderful community of people affected by ovarian cancer. So we all have options.... there is a huge number of people for example on the Facebook group Ovarian Cancer UK. It is closed so posts can only be seen by members and names are real!
Online support is incredibly important... We all need to be fully aware of what we chose to share and with whom in order to make informed decisions...
Best wishes all,
Sx
Written by
Sunfleury-UK
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There are big issues with this... For example, many newly diagnosed women find this site and often it is the first time they are able to voice what they are feeling / fearing most. Many of us will encourage them to click on the 'this community only' option so that their personal details do not go out into the whole www! At this time, I know those closest to me were also seeking information from the main charities.... I can imagine that there will often be times when what was shared here would not neccesarily be wished to be shown on Ovacome's website, especially with a photo attached!!
Of course in signing up to any site we agree to the legal 'terms and conditions'... Though in truth how many of us read these, especially when distressed! Surely there was at least a need for courtesy, openness or consideration and likely a need for transparency, good practise and duty of care to all those affected by OVCA from Ovacome??
Thank you . You articulate this so much better then me. Please ladies especially those who are new to the site just make sure your happy about who can read your post. Clicking community will at least make it private to some extent .
I for one, was impressed by the overall impression of the new Ovacome site once you alerted it to me. I was also upset to see posts listed so thanks for drawing our attention to that element of the site. Is anyone getting in touch with Ovacome to have a word with them? I think it would be the most helpful way forward and the quickest way to remedy and remove those links.
There are two issues to my mind. Health Unlocked do not make it clear enough what it means when you post to select 'Community' that it restricts the visibility of the post to members. I believe it is not in their interests as I understand they make their income from professionals having access to our posts.
For Ovacome, I've been long concerned that there isn't an annual review of the Community. So many are dead, and if their relatives don't know about their membership of the forum they will not inform Ovacome to remove them. It upsets me dreadfully for their posts to come up from time-to-time in the linked posts area at the bottom on the screen. What I would suggest is that Ovacome have an easy-to-use annual rejoining system to ensure that everyone listed as a member of the forum is alive, and wants to remain part of it.
I agree Sarah, there are other online forums for women with ovarian cancer. This one has been a lifeline to me and I can't over-emphasise how much it has meant to me to have a combined forum and access to expert advice from their nurse-led line.
I think this unfortunate glitch is in part due to a lack of real member involvement by Ovacome in decision-making over the forum and I hope this might be rectified because it will genuinely make the forum patient-led which to my mind it has not been to date. It is why some members have moved from this group to what is in fact a patient-led Facebook forum and one where there have been very few incidences of unfortunate posting.
Can we collect some more responses from members and then elect someone to contact Ovacome to have a chat with them to represent all our thoughts. I feel sure we will all be able to move forward on this. The forum is a brilliant resource but we could make it one that that is even better for us all.
This is an amazing community of support, advice and experience and when newly diagnosed it was a true life-line to me.
I know many people who have benefitted greatly from having access to a (now free) helpline to the nurses at Ovacome.
It is distressing (& misleading) to have 4000 'members' when we know many of them have left both this site and sadly this life. Also as HU has expanded, it is very easy to click through to join a number of 'groups' so even within the 'community' there will be many many people without experience or interest in OVCA.
I have had a number of discussions with both HU and Ovacome, requesting that posts are 'Frozen' and so cannot be added to after a period of time... and being advised that this is not possible.... It is though, a common feature on many online forums.
I am sure that if Ovacome would welcome input from members of this forum, there are many here with fabulous insight
Sxxx
Hi Sunflurey,
Thanks for posting this, I wasn't aware this was happening & am not happy about it at all! So I have now removed my photo & amended some settings. But I can't see where to check that my posts are only visible to members of this community - can anyone tell me that please? (** Amended to say I've now found the setting but it looks like you can't change it retrospectively)
I would completely support someone contacting Ovacome about this privacy issue & agree with others that the forum should be patient-led.
Hi, you can go back and amend any post you've written using the edit facility. If however you 'reply' to someone else's post which is not restricted then your comments, along with the rest of the thread are visible to the www!
In previous versions of HU this was more obvious when a person posted....
That's very good news! Thank you for posting about this Sunfleury & for bringing it to Ovacome's attention. L x
I would also be very annoyed at any posts of replies being showed on a live stream. It is done without our awarenesss. I understand that these have now been take down. So in future we post to Community and this keeps our privacy safe.
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